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Project Patchwork - Now on Medium

Project Patchwork - Now on Medium

6 November 2018 - Update:

Sadly, the app has had to close. But the community continues! Go to Medium to find Project Patchwork from now on.

What is Project Patchwork?

Project Patchwork is a new social app for women with invisible illnesses. It’s designed to be a community rather than somewhere to get as many followers as possible (there’s no ‘friend count’).

 

Who is it for?

As the tagline says, it’s for women with invisible illnesses. Project Patchwork welcomes all women with health conditions, including trans women, as well as non-binary or gender-fluid people. Users’ health conditions include:

  • Anxiety

  • Catheter and Ostomy

  • Crohn’s Disease

  • Depression

  • Diabetes

  • Eating Disorders

  • Ehlers-Danlos Sydnrome

  • Endometriosis

  • Fibromyalgia

  • Food Allergy and Intolerance

  • Interstitial Cystitis

  • Irritable Bowel Syndrome

  • Lupus

  • ME/CFS

  • PTSD

  • POTS

  • Rheumatoid Arthritis 

While it is only non-men who are part of the conversation, anyone can download the app and have a look around if they are interested in hearing about the experiences of women with chronic health conditions. However, there are a few areas of the app that are ‘private’, ie: behind a paywall, so that users can feel secure in sharing their thoughts and experiences in confidence.

Why do we need an app for this?

Having a chronic or invisible illness can be lonely. From my point of view, having ME/CFS (‘Myalgic Encephalomyelitis’ or the more outdated ‘Chronic Fatigue Syndrome’) means that I can be quite cut off from the rest of the world. I’m not able to leave the house that often and it can be isolating. Even when friends and family are kind and supportive, it’s a different experience being able to talk to someone who just ‘gets’ how you’re feeling. The internet and social media is amazing for connecting with people around the world, and the support that comes from being in a group where everyone shares something in common, even if it is illness, is really reassuring.

For women, having a health condition can be extra difficult. Medical studies are mostly done on men, meaning women’s experiences aren’t even being considered in medical literature. For example, when talking about chronic pain, 70% of the people it impacts are women. And yet, 80% of pain studies are conducted on male mice or human men. Furthermore, research shows that women’s pain is not taken as seriously as men’s. For example, 1 in 10 women have endometriosis, a condition that can cause debilitating pain, and yet the average diagnosis time for endometriosis is 7 and half years. Painful periods are brushed off as ‘normal’ and women are frequently told that there’s ‘nothing wrong’ and that they simply have a ‘low pain threshold’. Medical gaslighting at its best. (See the app to find out more.)

Project Patchwork founder, Wendy England, had endometriosis for 16 years before she was diagnosed, and it then took 2 more years to receive correct treatment. ‘She was fed up with the lack of support being provided’ and ‘felt heartbroken at the loss of her life to pain.’ ‘Wendy realised that the best way for women to connect with each other… was through their phones.’ ‘Wendy hopes that it will bring much woman to women support and grow to accommodate their needs in the years to come.’

What’s the app like? 

In short, it’s welcoming, supportive, and informative. It has areas for general chat and for talking about your health issues. There’s a forum for each condition (and the list is expanding) where you can ask questions and give advice to others, or read about real life experiences. There’s also a ‘Local Friends’ area that allows you to connect with people who live nearby. Wendy is adamant that the conversations be kind and that no malice be tolerated. My experience of it so far has been delightful and there hasn’t been a nasty word in sight.

Since being part of the Project Patchwork community, I’ve felt emboldened by all these wonderful women who are living and persevering and shining despite their struggles.

Best bits?

I’ve been part of the Project Patchwork community for a couple of weeks now, and I love catching up on the main thread. People share bits and bobs about their lives and what they’re up to - it’s relaxed and warm and full of sisterly support. There are specific groups for venting or for posting funny stories or memes, or for sharing hope and positivity. The fact that these areas are separate is wonderful - you know what you’re going to get so if you’re just popping by for some humour, for example, you know where to go. I also love seeing Wendy’s smiling face pop up on the live videos. It was created by a women with an invisible illness for women with invisible illnesses, and it shows. The sisterhood is strong!

How can I get involved?

Search for ‘Project Patchwork’ on your app store! Come and join in.


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